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10-16 June 2024

Zoe met Mike on Channel 4’s First Dates in early 2020, where they hit it off but decided to be friends. After continuing to talk daily throughout lockdown, they realised they had feelings for each other. At the same time, Mike was diagnosed with MND. Their relationship blossomed after lockdown lifted, and in August 2022 they got married.  

Zoe self-identified as a carer early on in their relationship. She said: “I did a lot of research in the early stages of our relationship, as Mike was diagnosed with MND just before we became a couple. I remember reading some MND Association information which said that, while carers may not identify themselves as such, it’s a term that the government recognises and it laid out some of the things that carers do. I read that and thought ‘that’s me’. 

“As a carer, I’ve been able to access support from the MND Association, such as money towards driving lessons so that I could pass my test and take over the driving from Mike. I still work full-time so I don’t access Carer’s Allowance or any other benefits. Since identifying myself as a carer at work I’ve found out that a few colleagues are also carers, so we now have a bit of emotional support and visibility between us, and I’m now able to work from home most of the time.  

“When I wake up, I get Mike out of bed and wash and dress him. I give him his medication, flush his feeding tube and then we have breakfast before I start work. While I’m working, I get anything for Mike that he needs as he can’t use his arms to reach things, I scratch his nose if he has an itch. If he needs the toilet, I will move him to the toilet or commode. On my lunchbreak I prepare his lunch and give that to him, along with more medication. Then I go back to work, making up any time I’ve lost through helping Mike. After work, I’ll make us dinner, get Mike changed again and do any creams or medication, clean his teeth and get him into bed. Overnight, I am on call to help Mike with whatever he needs, like repositioning. That is just a regular day with no appointments, phone calls or journeys outside.  

“It’s so important that the government recognises carers. Without unpaid carers there’d be an even bigger strain on services and a lot more care workers would be needed. Carers do what they do because they love the person they care for, but it is really hard. They don’t want millions of pounds or a pat on the back, but they do want people to understand what caring is like and put accommodations in place for them to get by. Something has to give at some point, and Carer’s Allowance is not enough to live on.” 

With thanks to Zoe and the Motor Neurone Disease Association for sharing this story.

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